happy memorial day

the night before my doctor's visits, i usually have these awful dreams about my counts going down.
but fortunately, everything is looking okay. my counts are all pretty good.
my doctor's appt. was pretty quick today, and the only decision made was that next week, they would take out my hickman-that is the catheter i have in with two lines that allows for the nurses to take blood, administer transfusions, iv medications and anything else. i am sorta not in accordance but my one doctor said that i haven't been using it for more than 5 weeks than just getting my blood tested and since it is draining a little bit, it would be better to get it taken out.
the tinglies, i am still hving, she thinks could be mini-gvhd. she said as long as it stays this way, i will not need to go on steroids.
she also told me to stay completely out of the sun because of my skin and it may increase the GVHD and that i should just go oout for walks during the night. it is so hot out right now that i don't mind staying in the air conditioned apartment.
i'm tired today. i had to get up early for my doctor's appt. i will write more soon.
xo
jenn

halfway there

today is day +50!!!
in celebration of this, when i was walking down the stairs to get my mail. i thought i should be thankful for this. for day +50, so i decided that i needed to have a turkey dinner like thanksgiving. my mom asked what i wanted to for dinner, and i said "a turkey dinner, gobble gobble" -and she was like "how come you couldn't think of this yesterday when we were out with the car?". and i explained the thought process and then she thought it was cute-and i am going to have a delicious turkey dinner. my best friend jenna is coming over today from CT. she tries to come here once a week. a lil crazy but she does it. it's really amazing. also erica might come by, but i am not sure.
i just rode the bike. I have been having these tinglies that go all over my body and they are very hard to deal with. they started immediately when i was riding-i ride indoors on alison's bike but we have a trainer hooked up to it. I first thought I would be dealing with more of this in the winter so we thought it would be good but it's really good still because i can't really go out yet to do things like that. But these tinglies are really hard, so i made myself ride for only 5 minutes. But it's a start. I also tried to lift little weights today. I have been eating ice cream lately-like an ice cream monster.
I have started taking Flinstones vitamins. I asked the doctor if these tinglies could have something to do with lack of B12 and he didn't think so but told me to take osmething like flinstones with no iron. It is my fav. pill to take.
So it's memorial day weekend and we are just hanging out. I feel the hardness of this sometimes especially on the weekends. I am a very let's get up and go away type of person and i just can't do it now. it's hard.
and we're really in search of a new apt. now. and that is sorta hard. but kind exciting.
but today is day +50 and when i first made this little chart-thinking of getting to day +50 seemed sooo far away-and it kinda has been-and 50 more is like OH gosh-and it isn't even the end. it's really a whole 6 months or year. but i still think "this is only temporary".
i really want to take a lot of my cds and put them on my itunes list and then put them on my ipod.
that is my next job.
I got a file cabinet yesterday-so that was the job for yesterday or two days ago actually-yesterday my mom and i did a lot. i went to the apple store because my adapter was messed up. then we went to gymboree-the kids store and got my niece a lil outfit for her bday. then we came home and i went to the laundry mat with my mom-to do laundry-but towards the end, i got really antsy and hot with the mask on and ended up vomiting a little bit.
i have so many hospital/insurance papers. it's too many for a 27 year old.
okay, i need to go.
love
jenn

monday's dr. appt

so for now, i am going to the doctor every monday or every week. next week will be tuesday bc of memorial day.
i had this awful dream lastnight that my counts went down real low. my wbc was at .84, my hemoglobin was 7.3 and my platelets were really really low, and outside of my hospital room instead of a nurse's station was bar. oh so i had a nurse that was injecting this stuff called neupogen-which stimulates the bone marrow to increase counts, usually the white count first, but she gave me five injections. and she kept injecting me in the face. and i kept saying to this nurse "you know my arm or leg is fine" and she was like "no" and i had all these welts on my face-so weird, because i have not had to use neupogen. but then i said to the nurse, "am i getting any transfusions?" (because my counts were so low) and she just said "no the doctor has ordered you drink a guinness"...so i woke up today, terrified that i was in for some low counts. i think it was this antihistamine med that i am taking sometimes for these tingly nerve feelings i get through my body. But it was kinda funny.
My counts are doing okay. My wbc went down a little bit to 4.4 but still good. My hemoglobin was 11.8 which is fine and my platelets went down a little more to 106. The doctor thought last week, i was possibly showing signs of GVHD but this week has ruled that out. He doesn'jt believe i am showing symptoms of that. Today is day +47, almost halfway there.
The doctor told me about how long I would be on most of my medications. I get off the antifungal-my diflucan-in about a month. Then after 6 months, I can stop the prograf and probably the high blood pressure medication and folic acid. For a year, I will be taking antibiotics. I take penicillin, acyclovir, bactrim. The other medication that I am stopping today is a birth control pill. I also take 266 milligrams of magnesium and protein 3 x a day and that will probably stop or lessen when I get off the prograf.

The only other thing that we look for is the GVHD and well the CMV. BUT if i get GVHD, I will most likely go on steroids. If i get Acute which happens in the first 100 days, I Will be on massive doses of steroids, approx 160 mg a day-for a while.

My mother just almost made me cry-but i held it in. She said that watching me go through the ATG-the rabbit crap that really made me sick before my bone marrow transplant was harder than childbirth.

saturday morning

my brother, sister and niece are leaving to go back to NC today. I wish i could see them before they go but i don't know if that is possible. I have been sort of bummed because they came in tuesday but I have only seen my sister once very quickly on Tuesday. And I was on that antihistamine that was just leaving me on the couch. My brother stayed here and we attempted to play scrabble. I was allowed to see my niece from the doctor and nurse, but then when she got here she had a runny nose, so we decided that it would be better for me not to see her.
On wednesday was the silent auction. Taylor, my niece, went up to Alison. She tapped her on the shoulder and said, "is jenn here?" and alison told her "no she is at home." and then taylor responded "but this is her birthday party". aww.
someone must have told her it was a party for me. I do not know what she think or understands. I know the last time I saw her she was scared of me with no hair to some degree so I have chosen to not see wearing a mask. And knowing that she has a cold, I have decided to stay away from it.
My sister then started to feel kinda sick-not sure if she had cold or allergies on Wednesday/THursday, so I have not seen her again. My brother came over lastnight with my dad and my brother and i played the longest game of scrabble as my parents waited so we would play cards with them.
I wish my brother and sister were closer sometimes because they are amazing with me and I know they want to be here more with me. And I enjoy them. it is familiar. It is hard too because they stay in Norwood when they come which is about 45 minutes to an hour away. At least my mother has got to spend some time with Taylor. I am really happy they were here for the auction. I had made a video and i really wanted my family to be there for it.
My dad started to talk about the video the other night, saying it was so great, and he started to cry. I kinda cry when I watch it.
I have to make some copies. I was proud of myself. It was my first project I did on my computer post-transplant. I worked on a lot of it in the hospital, when I wasn't dizzy from all the meds.
I am still nauseaus sometimes. But overall, it's going really well. Alison and I were talking about my dreams today. And its been really weird because I feel like to thnk of dreams just hasn't happened. And it isn't like a sad thing, it's been about just fighting this thing and winning and to keep moving on day by day. I can't wait until I can get a puppy or go away on a vacation or finish my last ten credits. And have my grandma sit in Madison Square Garden for my graduation. i have taken this crazy path of college. I have taken classes from community college to harvard. And there is everything in between. I have met amazing people and had the opportunity to go to some really amazing places taking care of an autistic boy and his twin brother who wasn't autistic. Judy, their mother, ,helped out with so many donations that did pretty well. She wrote to James Taylor who donated things and Sting. I have sat backstage in John Mellencamp's room, just places I never thought I would be. I have had leukemia before and had to take a year off of school. I have had all these stops and bumps and places that brought me and helped me and taught me things. I just like to see where things take me. But I will graduate from college. My grandmother always says "I want to see you graduate before I die." My uncle and I were joking around one time, morbidly, and said "i might be the only thing keeping her alive"
i guess i mostly dream of having a backyard to just go and read a book in or something.
Right now, Alison and I are talking about where we should move to next. OUr lease is up in August and our place right now is a little too noisy. We need more quiet and also a little more room. We thought of the suburbs. We are trying to figure out how to do this because Alison goes into Times Square monday-friday, so it is just trying to see what is out there and whate we can afford. In hoboken, we have so many expenses. There is also the concern of my money situation and my recovery time. We have a car that we have in the garage-and then the insurance-the rent-it's all very pricey here-
I just think it will all be okay.
Alison is cleaning our bedroom and she made me make breakfast today. I tried to tell her "i'm sick" and she wouldn't take that. mornings are still my roughest period with nausea.
well i have to go shower and get dressed-and call my family to see if i will see them or say goodby on the phone.
i will post some pictures of the auction when i get them.

day +43

lastnight was the silent auction-and it was a blast from what i hear-thank you everyone for attending and helping out.
it is really sweet and overwhelming to see the outpouring of support. alison worked so hard on everything and from the pictures it was set up so beautifully-the way i envisioned it.
i was part of the pre-planning and i have tried to do as much as i can to have the night be the way i would like it and to have people have a good time. i know i wanted it to be a nice place-and for it to be something that made people feel special for being there. i think that was accomplished. SO many people came from all over and we got rid of almost everything there. my uncle ed bid on this amazing guitar there and gave it to alison at the end of the night. it was such an amazing gesture. I was so happy because i knew she wanted it so badly.
I have been having these tingly things through my body-i know it's a hard way to describe something but it feels like pins and needles or something closely related that starts in my back and goes throughout my body-at times. the doctor said it could be a little GVHD which could be good, but it really is irritating. He gave me this antihistamine to take when I need it and it really knocks me out. Two days ago, I think I slept most of the day.
At the clinic on Monday, my counts were still doing pretty well. My platelets have dropped a little bit to 111 which makes my doctor wonder what is going on with GVHD, but my wbc is 5.6 and my hemoglobin was 12.? I am still not allowed to do much-and the mask is my only form of a puppy right now, but it is still just weekly visits. I have been CMV - still which is a good thing.
I feel tired sometimes still and I mistake hunger for nausea-vice versa.
Overall, things are going okay-and we are ALMOST AT THE HALFWAY MARK day +50!
oh 50 more days-it just seems so long-each day can be long-sometimes

i have to figure out dinner.
i will write more later

day +34

so i say i will write more and i seem to be slacking
things are going okay.
i am now on day +34 and that means that i am looking for GVHD. The doctor said that acute GVHD will usually show up from day 30 - day 70. There were some things that he said might be showing that I am starting to get it, but he wasn't completely convinced. Yesterday, my counts were doing okay-my wbc and hemoglobin are pretty good but platelets dropped a little bit. He said this is a possible sign.
Lastnight and this morning I felt really nauseaus. i vomited all my eggs today. They were delicious, but my stomach was not happy. I woke up this morning at 630 and could not fall back asleep. i had back stomach pains/cramps. The mornings are usually pretty rough on my stomach.
I worked on some Silent auction things. I am trying to work on PR to make sure we have enough people to come. I really have been a part of this, although sick and watched Alison and many others work to help this thing. And we've got some amazing donations. Today I made up a one sheet that will be there in case people don't know me.
I also got the suburbanite to write another article. Howard, the writer, has been so amazing with helping me out. i also contacted the Bergen Record but Deena Yellin, the norwood person in charge. She said she would put a small article in. She has been really nice in putting things in, but sometimes I wish it seemed more important to her. I know that may sound selfish but I want people to know about bone marrow. I am a 27 year old fighting for my life and although not everyone needs to know the intensity of this-I know that so much can be done. The Record reaches so many people and having articles in there really gets people. I wish she would do a little more for me.
So my mom have been p.aying this game spite and malice that Jenna introduced me to. I have been taking it kinda easy. I am sorta ehh but doing okay.
today we got another guitar signed by ben harper but we might auction that on ebay. Thank you Kristen. She has been working her ass off on getting us donations.
tomorrow mom and i are going to watch the shining. i will really try to write more.
thanks to everyone who is going to the auction.
i am watching american idol. i feel like i watch so much tv.
david blaine lastnight was crazy.
i feel like i relate to him. my liver enzymes are up. my skin is peeling-and occassionally my arms and feet are tingly.